On a bitter March morning in 2014, I picked my way across an icy corner in Point Breeze and knocked on Patricia Sankey's storm door. I heard slow, heavy steps and the rattle of keys, and then Sankey opened the inside door.
She was a short, round, older woman dressed in a pink housecoat. Tendrils of cigarette smoke pushed through the storm door's vents; the air inside the home was cloudy with it. She appeared wary.
I asked if she was related to Christina Sankey, 37, who had intellectual and developmental disabilities (I/DD) and had wandered off two weeks before while under the watch of a state-paid caregiver. Her body was found the next day on a sidewalk, five miles away. She had frozen to death overnight.
"I'm her mother," Sankey said.
I told her that I was trying to understand how her daughter went missing in the first place, and that no one seemed to think it was a big deal that Christina's caregiver lost track of her. That the police and coroner had been quick to dismiss the death as a tragic accident with apparently little investigation. That there had been no mention of potential neglect by the caregiver, the way there would be if Christina had been an equally vulnerable child.
I didn't know if anything sinister or reckless had happened, but I wondered if Christina's known disabilities were preventing anyone from giving her death the attention it deserved.
I asked Sankey if I might come inside and speak with her. She refused. But she started talking.
"No one cares about Christina," she said angrily. "My girl is dead, but Ayesha is out there alive and well, taking care of her own children."
We spoke for a half hour, on opposite sides of the smoky doorway. Sankey said that Hussanatu "Ayesha" Wulu, a married mother of two, had been Christina's caregiver for four years. She could be unreliable, but Christina loved her. So Sankey allowed the relationship to continue. Wulu knew that Christina, who had the intellectual capacity of a toddler, was a wanderer, easily distracted, that she was unable to speak. In public places you had to keep her in view and within arm's length at all times or she'd take off, moving fast, heedless of traffic and other dangers.
"She never should have been downtown, in a department store" — Macy's — which is where Wulu lost Christina while inspecting baubles at a jewelry counter, Sankey said. "It was no place for my daughter."
As a result, Wulu was charged and eventually pleaded guilty to one felony count of neglect of care of a dependent person and a misdemeanor count of reckless endangerment. She was placed under house arrest for 11½ to 23 months, then on probation for three years.
The sentence brought no comfort to Sankey.
"We miss Christina every single day," said Sankey, whose surviving child, an adult daughter, also has an intellectual disability. "She was not going to set the world on fire. But she was my world."
Parents of adults with I/DD followed Christina's case closely, and they called to share their own horror stories about caregiver abuse and agency incompetence. About political and public indifference to the needs of those with I/DD. About the lack of compassion and resources for elderly parents who have become too old and frail to care for their aging, impaired children. About the sudden elimination of educational options when a disabled child turns 21, a descent so dramatic and universal that parents call it "falling off the cliff."
Their stories could fill a book. But each would only nick the surface of a crisis that is barreling toward us like a tsunami: We will soon have more intellectually and developmentally disabled adults living in this country than at any other time in our history.
Advances in medical care have allowed kids born with Down syndrome, for example, to live twice as long as they did just 20 years ago. And the explosion in the number of children with autism — one in 68 children are now diagnosed — means we'll soon have a vast population of adults in need of services like those Christina's family had hoped would keep her safe.
Add these numbers to those of children born with the two other most common roots of intellectual disability — Fragile X syndrome and fetal alcohol spectrum disorder — and we have a looming social, economic, and moral crisis. What will we do about, with, and for these vulnerable adults and the families who struggle to care for them? And how much are we willing to pay for it?
What families have dealt with is shocking.
Annette Scott, 70, had to remove her intellectually disabled son, Justin, 32, from a group home after his retinas detached as a result of head trauma no one claimed to have witnessed; he is now blind. In his next placement, he broke his femur for reasons no one could explain.
"I said, 'Enough is enough,' and moved him home with me," says Scott, who lives in Mount Airy.
Marisol and Jose Ramos, ages 45 and 46, live in Wissinoming Park and have two children with intellectual disabilities: Naomi, 21, and Justin, 14. Naomi's impairments are profound: She's incontinent, doesn't speak, screams incessantly, constantly pings around the house, and can never be left alone. Justin is autistic but higher-functioning and easier to handle than his sister. The stress of managing the kids hit its nadir when Marisol suffered a stroke.
Relief came only when Naomi finally received Medicaid-funded services, for which there is a years-long waiting list, allowing the Ramoses to hire help. For the first time since their daughter was born, they were sleeping through the night.
Bob Sweeney, 60, became the legal guardian a decade ago of his intellectually disabled siblings — Joan, 65, and Danny, 63 — after his parents died. He lost so much time from work to take care of them that he lost two jobs in a row. He and his wife, Donna, 57, who live in Mayfair, have used up all their savings to stay afloat.
These families did not want pity. They adored their loved ones fiercely and just needed more help navigating the complicated, brave, rewarding, frustrating, beautiful, and bittersweet world of adults with intellectual and developmental disabilities.
I met scores of these families, who are dependent on a patchwork of supports whose struts are constantly battered by unpredictable caregivers, sloppy agencies, wavering government funding, and plain old bad luck.
Their need for competent help is daunting: In Pennsylvania alone, thousands of intellectually disabled adults are on a waiting list for services like the ones that Christina was receiving. But even for those lucky enough to get help, the questions are many:
What is it like to parent I/DD adult children who may never be able to advocate independently for themselves? Who is providing the day-to-day care to these vulnerable men and women? Who trains the paid caregivers and to whom are they accountable? How are aging parents handling the care of their adult I/DD sons and daughters as they handle their own infirmities?
And what happens to these children after their mothers and fathers die?
To parents of these children, looking out for them is not just a lifelong obligation but one they must plan for well after their own deaths. So they go to the ends of the earth to ensure their sons and daughters will have, to the best degree possible, what all parents want for their kids: safety, happiness, independence, meaning, belonging, and being known and loved for who they are.
But it is hard.
It takes time — many parents sacrifice their own careers and relationships to care for their forever-vulnerable children.
It takes money — for most parents, more than they can earn in a lifetime.
Donna Berns, 64, who is widowed and physically disabled, had to hire a lawyer when at-home services for her intellectually disabled and medically fragile daughter, Joanna, 35, were canceled because of an administrative glitch with the agency that provides Joanna's care. After futile months of dealing with unresponsive bureaucrats, Berns got results only after the attorney intervened.
"It cost us thousands. That's money we don't have to spare," says Berns, who lives in Roxborough and relies heavily on her other daughter, Bridget, 33 — who works in the support field and knows the ropes — to oversee Joanna's paperwork. "When even Bridget can't get anywhere, that's a problem."
And it takes public support. Indeed, every time a new state budget is considered, families shudder at the possibility that Medicaid dollars, which they rely on for services, will be slashed. Last year, Harrisburg legislators designated $6.2 million to fund services and supports for people with disabilities. The Department of Human Services, whose Office of Developmental Programs oversees disability programs, used the money to close a budget deficit.
"We lobbied fair and square for that money and were really happy when the appropriations committee approved the funds," Murt says. "I know DHS cares deeply about people with disabilities, and they used those funds with a heavy heart. But I can't ever recall a budget reallocation of that magnitude."
Gov. Wolf's budget this year — if it ever passes — includes $26.2 million that should reduce the waiting list for services by almost 15 percent. But there are still thousands of families in need.
"If people knew our stories," says Audrey Coccia, "they'd understand what all the worry is about."
For decades, Coccia, 78, and her husband, Vince, 79, worked as a team to care for their daughter Gina, 50. Along the way, Audrey cofounded Vision for Equality, an advocacy group that helps families of disabled relatives access services for their loved ones.
Vince Coccia, a retired Philadelphia firefighter and two-time cancer survivor, now has Alzheimer's, so it is falling on his wife to shoulder alone the responsibility of overseeing Gina's life. Thankfully, the family has state-paid workers to help with Gina. Coccia doesn't want to think of where they'd be without the assistance.
"We're old," says Coccia. "How can families get by without this kind of help?"
Just a few generations ago, the question would've been moot, because children with I/DD — no matter how mild or severe their disabilities — were shuffled off to government-run residential institutions to be warehoused until they died.
It took generations for the public to learn of the atrocities that occurred behind the locked doors of places like Pennhurst State School and Hospital in Chester County and Philadelphia State Hospital at Byberry in Northeast Philadelphia. As investigations uncovered the cruelty, abuse, and neglect that residents endured, most institutions were closed (a handful remain in Pennsylvania).
But the closures created a problem: How and where would those with I/DD spend their days? The question was partially answered in 1975 with the passage of the Individuals With Disabilities Education Act, which entitles all children to an education appropriate to their needs and abilities, delivered — whenever possible — in a regular school setting.
The services provide more than tailored academic or life-skills instruction: They give a child a place to be each day, a place to belong. That's no small thing in a world that often sees a person's disabilities before it sees the person.
The school entitlement also gives parents peace of mind and a predictable schedule that a family needs to function.
After age 21, though, the entitlement ends and families must find new ways to fill their grown children's days — the "falling off the cliff" shift that parents refer to.
"The difference is day and night," says Audrey Coccia. "One day your kid is getting what she needs. You're able to go to work because she's being looked after. The day she turns 21 — boom — the help ends. But it's not like she isn't disabled any more or you don't need your job! You can't leave her home alone, and if you quit your job to take care of them, you'll go bankrupt. I'm telling you, there's real hardship out there."
Many parents get so used to the education entitlement, they don't plan for its end, says Larry Pace.
"They don't realize there's a waiting list for services" that their children will still need, says Pace, director of operations in the city's Department of Behavioral Health and Intellectual disAbility Services. "It can take years to get help."
Specifically, he's referring to what's called a waiver — a combination of Medicaid and federal dollars — earmarked for those with I/DD to receive care outside of state institutions. In accepting the funds, recipients "waive" their right to institutional care in exchange for receiving services in their homes or communities. If they don't "waive" their right, the state would be required to serve them immediately and at a much higher cost to the commonwealth. There are numerous types of waivers, and each has its own eligibility requirements and provides unique services.
Waivers are bestowed county by county, and the waiting list for them is unbelievable.
In Pennsylvania alone, more than 13,500 families are waiting for help with their I/DD adult children, according to the Waiting List Campaign, an advocacy group that tracks the status of waiver availability. Of that number, 4,900-plus families are considered to be in "urgent need."
The needs are often life-and-death, says Liat Richardson-Owens, a program manager in the city department.
She recently got a call about an intellectually disabled man who was living with an elderly relative. A neighbor was worried that he'd not seen the man and called 911. When police arrived, they found that the elderly relative had been deceased for several days and the man had been alone without food or supervision.
In another case, two sisters with I/DD were living with their sick, physically impaired mother in a falling-down, rodent-and-bug-infested home. The sisters were removed, but one required hospitalization to stabilize her health before she could be placed in a community-living arrangement. The mother died shortly after her daughters were moved.
"The situations will break your heart," says Richardson-Owens. "They all need waivers, and there just aren't enough."
New waivers become available when a current recipient dies, moves out of state, or does not use a waiver service within 30 days. Some waivers also open up if Harrisburg budgets for extra capacity, but – as last year's reallocated budget funds illustrated – even that's not a guarantee.
That leaves Richardson-Owens with a miserable task: Each morning, she checks the ODP information system to see if any current waiver recipients have died. If so, one family's sorrow will become another's joy when they learn that a desperately needed waiver has become available.
"But for every waiver we give out, we know there's a list of families who are just as needy," Richardson-Owens says with a sigh.
Gary Bernstein, 55, and Sheila Kineke, 57, are losing sleep over what will happen to their family if their 20-year-old twin sons, Andrew and Lewis, fall off the cliff next year.
"Without funding, there's no real future for them or us," says Bernstein, a professor of astronomy and astrophysics; Kineke teaches college English part time and also works part-time for Values Into Action, a support agency for people with disabilities.
Andrew and Lewis have a rare genetic disorder called Bannayan-Riley-Ruvalcaba syndrome that has caused autism, intellectual disabilities, and complicated medical problems: Andrew is hearing-impaired and suffers seizures; Lewis has hundreds of polyps in his colon that must be regularly checked for malignancy.
The boys can speak, but do not initiate conversation; they answer questions with blank stares. They read at a second-grade level — they learned early — but have little comprehension of the text and can't draw inferences from what they've read. Still, Lewis has memorized dozens of children's books and both boys can sing 100 songs.
Andrew and Lewis cannot be left at home alone. If an emergency arose, they'd be unable to dial 911, let alone say why they needed help.
The boys rely on routine, and their behavior can become volatile when that routine is disrupted — whether by a dog's bark, a late arrival to a planned activity, or the disappearance of a favorite shirt in the laundry.
"They're like little children," says Bernstein. "They are very much in the present moment, and their emotions are completely unmediated. When they're happy, they're totally happy; when they're upset, they're totally upset."
So Kineke and Bernstein spend a lot of time preparing Andrew and Lewis for activities that are out of the ordinary. Before a cousin's recent wedding, for example, Kineke wrote a story that explained the kind of clothes they'd wear, how long the drive would take, what the food and schedule would be like. The day went well.
"If we don't prepare them for change, it gets really ugly, really fast," says Kineke. "No one wants to see two young men screaming and biting each other."
On this weekday evening, Andrew and Lewis are calm and smiling as they tiptoe in and out of the living room of the family's home in Merion.
"You're going to do the garbage?" Bernstein asks as Andrew empties a wastebasket into a trash bag, one of his favorite chores. He also likes putting away dishes and will get up in the middle of the night to empty the dishwasher if he hears its cycle finish.
"Nice job, Andrew," says Kineke.
"Penguin!" he says.
"Ah, you're being silly," teases Bernstein.
Without a waiver when the boys turn 21, Kineke and Bernstein won't be able to continue sending them to Preparing Adolescents for Adult Life — PAAL — a behavioral program based in Downingtown, which would be a loss. The boys' behaviors have improved noticeably while enrolled there.
Right now, the Lower Merion School District picks up the lion's share of PAAL's hefty tab; Kineke and Bernstein pay the balance (they won't discuss specifics, but PAAL's annual fees are well into the tens of thousands per student). If the boys are not granted waivers, the family will have to pull them out of PAAL and Kineke will quit her part-time jobs to care full-time for her sons.
The possibility is unthinkable.
"We'd be stuck at home all day, because I can't take both of them out by myself," says Kineke.
She recalls the time she had to stop the car when the boys started fighting. They spilled out of the vehicle and onto a homeowner's lawn, where Kineke tried to calm and separate them. Neighbors called police, whose screaming sirens freaked out the boys even more.
"It was awful," she says.
Losing Kineke's income would be a blow to the family, says Bernstein.
"We're saving all we can, but there's no way we can save enough to pay for all the help they'll need," says Bernstein, especially as he and Kineke try to save for their own retirements. "So for us to work less when they turn 21 is not a good idea, but we may not have an option."
The irony is that, if forced, they could exercise the boys' entitlement to care in an institutional setting, at a cost to taxpayers about five times higher than what a waiver would provide.
"It's the last thing we want and it also should be the last thing the state wants," Bernstein says in frustration. "But it kind of feels like the state plays chicken with you, because they know you don't want to institutionalize your children."
That doesn't mean that the possibility of institutionalization is out of the question for the boys, says Kineke. But she hopes with all her heart it won't come to that for Andrew and Lewis.
"They've done the best they could with what they've got," she says proudly, "and we've done the best we could with what we've got. That's taken a lot of effort by us and other people to help the boys get to the point they're at today. I don't want to see all of that get flushed just because someone has decided that at 21 they'll just integrate into normal life without need of support.
"Twenty-one," says Kineke, as she and Bernstein nervously await their sons' next birthday, "is not a magic number."
To learn more about waivers in Pennsylvania, contact the state Department of Human Services http://www.dhs.pa.gov/learnaboutdhs/waiverinformation/index.htm